Saturday, May 17, 2014

Lyme Awareness Protests


This weekend will see awareness protests around the world with the aim of increasing awareness of Lyme disease and gaining proper treatment for patients and updated information, based on current research for doctors, other health professionals, and patients.

Details, pictures, and media coverage from all the protests can be found on the Worldwide Lyme Protest facebook page.

In the UK, Friday saw a Lyme awareness protest in Manchester; Saturday will see a protest outside the Department of Health in London.

See the Lyme Disease UK facebook page for coverage of both events.

If you're in London and looking for something to do tomorrow - join in the protest; take the place of someone who wishes to be there but is too ill to attend because treatment is not available....

If you can't do that, show your support by supporting the GoLymeGreen campaign - wear green, turn your profiles pictures green and share awareness about Lyme!

Your help could save someone's life.

Be the change you wish to see in the world

~ Gandhi

Thursday, May 15, 2014

But you don't look sick....

    This week is a big week in awareness campaigns.   May 12th was Chronic Fatigue Syndrome awareness day.  I intended to blog on the day, but I've not been having the best week health-wise, so here it is today….. Better late than never!

    Before I was diagnosed with Lyme disease, I was 'diagnosed' with 'Post-Viral Fatigue  Syndrome' which after 6 months, becomes 'Chronic Fatigue Syndrome' (also known as CFS/ ME - myalgic encephalomyelitis).  In the US it is known as CFIDS (chronic fatigue immune deficiency syndrome).  If I've learned anything on my rollercoaster health 'adventure' it is this: when doctors and researchers can't agree on a name for something, you really don't want to have it.  Nobody really likes any of the names (for simplicity, I'm going to use 'CFS' in this post - but I will agree - I don't like any of the names either).  The US one at least lends a degree of gravity to the condition, something not really communicated with 'Chronic Fatigue Syndrome' - unfortunately that focuses entirely on the word 'fatigue' and leads to people saying things like, "everyone gets tired" (adding 'syndrome' is really important - it differentiates between a recognised medical condition: chronic fatigue syndrome, and a very general symptom, common across many illnesses: chronic fatigue).  

    Eventually, hearing "I'm so tired" (and then watching the person go to work/ the gym/ the pub…..) makes you want to punch anyone who says they are tired, because, really, tired is not the right word (and we do know this is not really anyone's fault!).  Yes, everyone does get tired.  But 'normal' people can go to bed, sleep, and wake up the next morning feeling refreshed.  If they have a busy week, a few late nights - they can still do that at the weekend - they can always catch up on their sleep.

    Anyone with medical fatigue simply can't do that.  So the word fatigue, equated with tired, just doesn't cut it. There should be another word for it - personally I quite like:  'a-vampire-sucked-all-the-energy-out-of-my-body-instead-of-my-blood-and-now-I-am-one-of-the-walking-dead'  (if the Germans can come up with one word for that, it would be great, everyone else could adopt it - they're great at lumping lots of words together and creating new giant words in a way no other language can.)

    One of the main problems with CFS'is that you can't obviously see the symptoms (more details below). It falls in the realm of the 'invisible illness' .  You can't see that the person looks sick - not unless you look really closely.  Always look into someone's eyes - it's amazing what you can see.   

    Everyone knows you can wake up from a bad night's sleep/ horrid hangover, look at your big baggy eyes in the mirror and slap on some concealer and a mask of make-up (ok, guys, you know this, perhaps you just don't do it….).  That works in CFS too.  The mornings I used to wake up feeling my absolute worst were the ones the full mask of make-up was slapped on (that still applies - Lyme/ CFS = same symptoms; hence the frequency of misdiagnosis).  Inevitably, then come the "you're looking better today" comments. Unfortunately this kind of makes you want to punch people too…. It's not really logical, and most people have genuinely nice intentions and are trying to be kind; but knowing what you looked like when YOU looked in the mirror, combined with a pervasive lack of understanding of 'invisible illnesses',  can make the simplest comment feel like an accusation - even when you logically know the person didn't mean it (although sometimes there are people who DO mean it…. They deserve to be punched.  Luckily for them, we simply don't have the energy!).

    While thinking about all of that, I looked back over some old photographs.  I hated getting my photo taken when I was severely ill.  It wasn't a vanity thing (everything wasn't splashed all over facebook then anyway, it wasn't like many people were going to see it; but even if it had been, that wasn't the point….), I simply didn't want to look like that.  I didn't look like ME anymore.  The few photos that do exist were taken on those days with some bronzer and mascara and made me look a lot better than I did when I looked in the mirror naked-faced.  Knowing that actually makes this even worse:

    Top Row: 2005 ~ Bottom Row: 2004

    Top row: photos taken in 2005, the year I got ill

     1. Dinner at my Uncle's. I vividly remember that night - when we got home, my Dad half-carried me upstairs & I went to bed with my clothes on: I didn't even have the energy to put on PJs
    2 & 3. July 2005 - 6/7 months after I'd been ill; in both of these I am make-up-ed & dressed up for dinner - note the fancy earrings in attempt to look 'normal'

    Quite honestly, putting these photos side-by-side for comparison is something I've not done before and even although I know I hate photos of myself from that time, looking at them this way really reminds me why….. I don't really have the words to describe all the feelings and emotions this brings back.

    Bottom row: photos taken in 2004, the previous year

    1. Trampoline club xmas night out in Dec 2004 - ONE month before I got ill
    2. My graduation, July 2004
    3. My birthday, March 2004

    The solution, of course, is not to wear any make-up and just look like crap - maybe then people will see.  But there's a lot of weight to that.  Why do we wear make-up anyway?  

    The recent 'selfie' campaign for cancer awareness (which, as successful as it was, was NOT an awareness campaign - it was a fundraising campaign:  everyone is aware of cancer; this doesn't mean it was a bad thing - it was a great fundraising campaign, very successful; but it wasn't awareness) proved that our outward appearance is deeply connected with how we want to project ourselves.  We can control the way others see us.  But posting a picture of yourself without make-up isn't a brave thing - it's nothing like dealing with the insecurities and psychological issues that serious illnesses cause - they take away control in every way; but the fact it went viral and WAS so successful DOES show how much we want to be in control of how others see us.

     For me, I hated looking in the mirror and feeling like a stranger was staring back at me.  On the days I had the energy to go out, I had make up on - usually applied while propped up in bed, and slapped on in about 5 minutes - simply a mask: concealer hiding the dark circles round my eyes and the horrible acne that appeared; mascara making my eyes look open; and some bronzer/ blusher so I didn't actually look like the walking dead (the comparisons above show exactly how well that all worked...)  The cancer-selfie campaign didn't show people looking like that - not like any seriously ill patient - it just showed women with no make-up on.  But it raised a great amount of money - by tapping into the female psyche in a big way.  Unfortunately I think it missed the opportunity to really explain why it was a big deal, or could be a big deal - why it is a big deal for people suffering from serious illnesses.

    Am I equating CFS with cancer?  Yup.  That's how serious it can be.  I know that's a controversial thing to say, but it is not a new thing, and it is not a revolutionary idea.  I say it in the hope that it will genuinely make people aware of how difficult it can be to deal with CFS.  The very fact it is an 'invisible illness' makes it even more complex.  The Canadian guidelines (highly regarded for CFS 'diagnosis') for diagnosing CFS equate the level of suffering with that of a cancer patient undergoing chemotherapy, or an HIV patient (see page 3 of the linked document).  The level of pain, disability and general quality of life is comparable.  I also know this because I have people close to me who have experienced cancer, and when we discuss our illnesses, we absolutely 'get' each other, while always acknowledging our experiences have been different, we all have learned similar lessons and developed similar views on life - all shaped by our experiences.  Terminal cancer is an entirely different issue, although I have read somewhere that those in 'the 25% group' - ME/CFS patients whose quality of life is rated at 25%, or lower, of 'normal' - can be compared to those suffering terminal cancer.  All of these people are usually housebound or bedbound, confined to a wheelchair if they are even able to leave the house; and are completely unable to look after themselves.
    This specifically is about depression - the point is the same:
    invisible illnesses can impact lives - can destroy lives - as much as very visible serious illnesses.

    Personally, I'm going out on a limb here and saying this because someone very close to me said it to me.  And afterwards she said "I can say that, because I've had cancer."

    She gave me permission to post her 'selfie' on my blog - and for me it was ONE of the most inspirational selfies I saw as part of that campaign (I saw a few which genuinely moved me. If you are reading this, you know who you are <3 ).  This is a genuinely brave photo,  shared from an incredibly difficult time in her life (the photo is about 5 years old now - I am very happy to have her here for her incredible compassion, understanding, and advice; but even moreso just to have her here - and most importantly, for some other special people in my life to have her in theirs).

    My inspirational cousin


    The best analogy, and the best known analogy, is featured on the website and is written by Christine Miserandino.  It's called The Spoon Theory and you can read it here: The Spoon Theory  It's a great analogy for all kinds of chronic illness where energy levels are severely affected, and can be extremely helpful in helping friends and family and even co-workers understand a little bit better.

    And an awesome visual of The Spoon Theory - found on Pinterest:

    One of the most difficult things about a CFS diagnosis is that it is non-specific.  It is an umbrella term for a group of symptoms - many CFS sufferers are eventually diagnosed with something else - that comes as a great relief.  It is becoming more common to eventually get a diagnosis of Lyme disease, or similar 'hidden' infections - ones caused by micoorganisms that do not show up on basic blood tests and have the ability to 'hide' from the immune system. Those who eventually find an answer are the lucky ones - treatment is then possible.

    There are many symptoms documented as being experienced by CFS sufferers.  These can include:

  1. 'Fatigue' symptoms
    • Extreme fatigue: "pathophysiological exhaustion" (from the Canadian Criteria)
    • Unrefreshing sleep
    • Very low energy levels
    • Severe malaise (slow recovery from anything 'energetic')

  2. General physical symptoms
    • severe headaches & migraines
    • Nausea & sickness/ vomiting
    • Muscle pain, bone and joint pain;  'heavy' legs
    • Swollen lymph nodes & swollen glands
    • sore throat, constant flu-like feeling

  3. Neurological symptoms
    • 'Brain fog' (difficulty thinking)
    • Problems with word retrieval
    • Symptoms of dyslexia
    • Forgetting  what you are talking about right in the middle of a sentence/ conversation
    • Problems with mental arithmetic (which were not present before)
    • Problems concentrating or focusing on mental tasks
    • Psychiatric symptoms, e.g. depression, anxiety, OCD

  4. Severe symptoms
    • Cardio: racing heart; increased heart beat; palpitations
    • Interminable pain, e.g. skin hypersensitivity so bad that even a bed sheet brushing across skin can be painful
    • Inability to eat, requiring a feeding tube
    • Death: CFS has been documented as cause of death

    How does it feel?

    Imagine waking up with the worst hangover you can think of, full-blown 'flu, and then having to running a marathon.  Living with CFS is like that every day.  The aches and pains that (genuine) 'flu causes are constant; the 'hangover' feeling - the hit-on-the-head-with-a baseball-bat-can't-think-can't concentrate-don't-like-light-or-noise-want-to-pull-the-covers-over-your-head-rest-your-head-on-the-softest-pillow-that-exists-and-curl-up-in-the-foetal-position-in-pure-silence-all-day - that's about how it feels……..

    But then you have to get up and run the metaphorical marathon.  That is simply daily living.  Everyone who suffers from CFS runs a different marathon every day.  Some people slip more gradually into full-blown CFS following another illness, or a severely stressful life event (which can also affect the immune system), or a traumatic event - such as a car crash, also documented as having caused the onset of CFS.  Others do as I did, the illness doesn't come on gradually, it hits them like a bullet train.  All sense of normality is blasted away and simply trying to survive each day becomes the 'marathon'.

    When I got ill in 2005, I was halfway through my MSc, planned to continue to the PhD programme (I had a scholarship for both) and I literally bounced everywhere.  Then I was hit by that metaphorical bullet train.  I went from being a healthy, active, fit, energetic, bouncy person to feeling like the walking dead. 

    All the energy I had was spent on finishing my MSc - I had none left for anything else.  Friendships slipped away, my social life disappeared - and, of course, gym memberships were cancelled.  CFS (in my case, caused by Lyme disease) snatched away my life as I knew it in an instant.  

    For my full story click on "My Lyme Story" at the top of the page. 

    Getting my Lyme diagnosis was actually wonderful. (Getting it 4 years earlier would have been better.... But at least I had something - I had hope.)  Having a 'real' disease - something I could say, "I have Lyme disease" and explain it if asked…. "It's a bacterial infection caused by the bacterium Borrelia Burgdorferi…." was so different to saying I had CFS.   Nobody really knows about it, it's hard to explain and it's hard to understand - I certainly couldn't have understood it before I felt it.  I like to think I would have been empathetic, but I know now I wouldn't really have 'got' it. 

    Unfortunately I have a friend experiencing this just now and she has said virtually the same to me.  My friend has always been a great friend to me, and I HATE seeing her go through this, because I hate that when we have conversations now, she is not just being empathetic (as she always was), she really 'gets it' and I really wish she didn't.

    Many people who get a CFS 'diagnosis' spend years simply trying to survive before they are diagnosed with something treatable.   Recent research has shown that bacteria - of different types - can lie dormant in the body for significant periods of time; and that they can 'talk' to each other: send out a signal that lets their attack-buddies know they have a big enough army to take on a weakened immune system (ok, that's clearly a simplification, but it's essentially how it works). 

    Research has shown people with CFS who test positive for multiple infections are 'more ill' than people who have only one or two infections  - that's pretty logical, AND microbiologists have scientifically proven it, so evidence-based medicine should be happy…..  Except current treatment for CFS is stuck in the 20th Century.  Cognitive Behaviour Therapy (CBT) is the 'gold standard' (excuse me while I break something) in CFS treatment in the UK.  I read some of my friend's 'booklet' she was given……. Actually, let's start with that - it's over 100 pages long.  Right off, whoever wrote that has NO IDEA about CFS.  I didn't read a book for nearly two years because I simply couldn't concentrate and my head was too sore. (And to put THAT into perspective, in 2004 when I finished my undergrad degree, I read TEN books the week after I finished - I was SO excited to have the time to read fiction again.)  But in the grasp of full-blown CFS, would I HELL have managed to read 100 pages of anything.

    I tried to read my friend's booklet…. I read the first few chapters….  I really really wanted to read more, but the more I read, the more I really really really really really wanted to HURT the person who wrote it.  From memory, as I don't have it to hand, it contained little gems like:

    "If you think tired, you will be tired"

    Yes.  Seriously.  Now….. That doesn't even apply to a healthy person.  Or to anything else.  Great, let's all "think thin" or "think f***ing winning lottery numbers" - anyone tried it?  Think it works?!  I can't really go on - it was ALL like that.  NOT helpful, and it certainly didn't 'get it'.  

    The Canadian document states:

    "A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based
    on the premise that the patient’s impairments are learned due to wrong thinking and
    “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the
    interaction of cognition, behaviour, and emotional processes. The patient merely has to change
    their thinking and their symptoms will be gone…

     "Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment…..

    "...their studies fail to cure or improve physiological impairments such as OI, sore throat,
    IBS, etc. Dr. A. Komaroff, a Harvard based world authority, stated that the evidence of
    biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms
    that are only imagined or amplified because of underlying psychiatric distress. It is time to put
    that hypothesis to rest”...

    "...Some physicians, who are cognizant of the biological pathophysiology
    of ME/CFS, teach patients coping skills… We urge such doctors to use the
    term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and
    “Cognitive Retraining Therapy”."

    (See pp 10-11)

    The Canadian document was published in the Journal of Chronic Fatigue Syndrome in 2003. yet clearly treatment in this country needs to be better.  Advancing general understanding and also changing medical approaches for CFS is urgently needed….. come on, - PLEASE!! - join us in the twenty-first century; read new research - try actually healing people….. Not expecting people to 'accept their limitations' - and certainly not trying to cure a physical illness, often linked with infections, by psychological treatments*. 

    CFS is a very real, very physical condition and awareness, understanding and compassion is SO very important to someone suffering from CFS.

     There are many people - including many researchers - who believe 'CFS' is an umbrella term for a group of symptoms, not a diagnosis.  There are also many people - telling their stories online, on forums, personal blogs, and even through some media outlets  -  who HAVE persisted, believing they would find a reason for their illness, or a doctor who could help them - and succeeded.  Most of these people speak out because they want to help others achieve the same - the internet has provided these people (myself included) with a voice to add to this movement; this effort to increase awareness - awareness of the effects of CFS and also awareness of potential causes and possible solutions.  Having experienced the horror of CFS, we want to help other people avoid it, and by spreading awareness and helping further understanding, hopefully - soon - that effort will be worth it.

    *disclaimer - I do believe CBT and similar approaches can be a very helpful addition to treatment when appropriate - coping with an illness, or trauma of any kind can be difficult and there are psychological techniques that are extremely helpful; in fact in most cases I'd go as far as to say the UK is years behind the US in this regard, except, apparently, when it's not really helpful.

    “Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

      ~ Emily Dickinson

Friday, May 2, 2014

The Problem

I am on various Lyme groups/ boards online, some I use more often than others, some I glance over every now and then; some offer lots of information, post links to new research or media articles, others are more focused on providing support to others.  All have their benefits and sometimes I wonder how I would ever possibly have coped if this had all happened to me before the internet existed.  

My research from the CFS 'diagnosis' to the microbiology theories which eventually guided me to my Lyme diagnosis was all done online.  I had access to a wealth of information at my fingertips.  A community of support without even leaving my bed (because I couldn't).  Now, the amount of information available online regarding Lyme & its associated diseases seems to increase exponentially every year.  And I'd like to say every single bit of information shared is valuable - from scientific studies published in journals, to personal stories shared on blogs  - they all add to a piece of the puzzle, share some insight into the 'Lyme experience'.

But I honestly have to draw the line and say this article 'Who What, Why? How dangerous are tick bites in the UK?, published on the BBC this week might be the WORST article I have read on anything Lyme-related that (apparently) aims to promote awareness.

The ONLY good thing I can say is it is talking about ticks and Lyme - they say no PR is bad PR, so I suppose, at the very least, it is being talked about.

But..... The Problem is in the content. (Actually the grammar nerd inside me has other issues with the article too.)  The content, the structure, the lack of research, the fact it fails to answer the question posed as its headline - and reads like it has been written by a school pupil on work experience - all combine to create a terrible piece of generic blurb which is helpful to nobody.

Oh, but it's on the BBC.  Back to The Problem - people will read this.  It's a quick, easy article - look everyone, the BBC is doing its bit to raise awareness....... except it doesn't.

Going through the article, here are a few BIG issues:

"there's no definitive data on how many ticks are in the country. Some areas have none..."

That's a bit like trying to count poppy seeds.  Seriously.  I doubt it is possible to EVER even guesstimate how many ticks there are anywhere.  And as for some areas not having any - since there's no way of counting them, ticks move, ticks attach themselves to animals and people (both of which have the ability to move further), this statement is completely and totally unverifiable. 

"Lyme disease is treatable with antibiotics if it's diagnosed early. But neurological problems and joint pain can develop months or years later if it's left untreated. In the worst cases, it can be fatal."

What should possibly be the most important part of the article is reduced to 34 words.  Is this the answer to the article? The word 'symptoms' is mentioned several times, and 'flu-type' symptoms and 'fatigue' mentioned in passing, but apart from those very general references, the above paragraph is ALL it says about symptoms (apart from my next point).  So, you might get bitten by a tick, if you have (undivulged) 'symptoms' and don't get treatment quickly you could die.  Wow.  That's just super-helpful and informative.


The most common symptom is a pink or red circular "bull's-eye" rash that develops around the area of the bite, but it doesn't appear in everyone. 

MYTH. This is NOT the most common symptom.  It's pretty much the only symptom that definitively confirms Lyme disease - and even still is not common knowledge among many GPs in this country - but studies and surveys quote statistics varying from 4% to 70% of people remembering/ developing a bullseye rash.  I could put a hundred references/ links here, so a quick Google search (or Google Scholar if you prefer to stick to the academic side) will produce hundreds - probably thousands - of different articles which cite different statistics on this one.

I think however, this paragraph has to be my favourite bit in the article. 

"For those worried about their gardens, keeping lawns short, raking up leaf litter and creating a buffer zone between habitats ticks tend to like and lawn-paving, wood chips and gravel can help."

As the grammar nerd inside me explodes, I'll just focus on the meaning of this sentence (or at least, what I think is the meaning of the sentence).

1. Ticks have habitats they like which appear a mystery to both the author and the reader

2. Short grass must deter poppy-sized ticks. Ever seen an insect crawling on a blade of grass?  A ladybird? A bee? A beetle? I have - doesn't seem to deter them, and they must be at least ten(?)/ a hundred(?) times larger than a tick.

3  "Raking up leaf litter".........................?................................. Even the sarcasm escapes me.

4.. Lawn paving, wood chips and gravel are magic.  They provide mystical deterrent properties that prevent bugs from travelling across them.  If only we knew.....

Just in case my sarcasm wasn't thick enough (come on now with this sarcasm font, I've seen enough people requesting one, can't we assign one, PLEASE?! I vote for comic sans, personally).....

1. Ticks attach to a host so they can feed on them.  A deer, bird, dog, rabbit, mouse, human - they don't really care.  They are blood-sucking arachnids (which it actually says in the article).  I don't think they have a 'habitat' they like to call home.

2. Short grass - yes, it is known that it is easier for a tick to attach itself to a host when it crawls up longer grass.  This is not really made clear.  It also usually refers to long wild grass encountered when hiking; not a lawn that needs to be an inch or so shorter.

3. "Raking up leaf litter".............. I have no words here.... except.... what??  There's not even an explanation!

4. See point 1. I haven't personally encountered any paving, woodchips or gravel that I have been unable to walk across, or that I have witnessed any animal being unable to walk across.  Attached tick - transported elsewhere.  It's really not rocket science.


"The most important thing is for those that think they might have symptoms of Lyme disease to go to the GP as prompt treatment will prevent complications. Symptoms usually take between three days to six weeks to appear after a tick bite."

Oh, if only they knew.  GP.  Prompt treatment.  Symptoms of Lyme disease.  I would like to say we are all laughing at the sheer naivety of using all those words in one sentence, but we're really not.  

We're not laughing because we are crying.

For accurate information on Lyme Disease see:

May is Lyme Disease Awareness Month

May is Lyme disease awareness month and the weekend of 16th-18th May will see protests around the globe, all aiming to increase awareness of this debilitating illness and demanding better access to treatment and information for both patients and doctors.

This year, I am involved in some various other ways of raising awareness, but I aim to post on my blog too - since this was its original purpose.  My journey out of the 'Lymelight' is just taking a few twists and turns...... actually twists and turns doesn't really cover it - it's turned into a rollercoaster....... the absolute craziest, most terrifying rollercoaster you can imagine, with vertical drops and loop-the-loops at supersonic speed..... in the dark.  I think that about covers it.

However, stories of my life are best left for another day.  Today I want to link to this blog and begin to draw attention to the social media aspect of Lyme awareness - social media holds such power, unimaginable even a few years ago.  Sharing information, turning your profile picture(s) green, or your cover picture to one of the many that have been created, or adding an 'awareness ribbon' to your profile will help raise awareness and stop this disease making people so devastatingly ill.  When Lyme is caught early, it is much easier to treat - knowledge and awareness can make this possible.

So please follow: during the month of May and help raise awareness for an illness which is so poorly understood.

This can be saved and used as your facebook cover photo